Scott Catches Up from Cancer
Hello; my name is Scott Corum. You might know me from a documentary called "The Dungeon Masters," or from the roleplaying games and supplements that I've written, or maybe you know my Blog, Matters of DeCorum at mattersofdecorum.com.
I'm a husband and father of one son (who is nearly fifteen and already taller than me), and I have a few years to go before I hit fifty. I've been a lot of things; a Biblical Theologian, statistician, actor, public speaker, youth minister, and author. Now I write roleplaying games, and a few other things.
I was also recently diagnosed with cancer of the mouth and throat; it's fast growing but relatively easy to treat, and I'm receiving excellent care as the result of excellent insurance. The problem is that between the cancer, chemotherapy, radiation, and complications, I have been unable to produce creatively for some time. That, as they say, doesn't pay the bills.
My wife and her position has allowed me a creative career, for which I am very greatful. As a writer of Role Playing Games and the occasional novella, it's hard enough to contribute when I'm at my best. Now, as things around the apartment start to break down and we end up needing to replace more and more of our stuff, I need to do something to help. The medical expenses are pretty much covered... it's my ability to contribute that is suffering the most.
Some of the funds gained through this campaign will go towards my future creative endeavors; the materials that allow me to produce game books and quality YouTube videos and the like. The rest goes to shore up the family finances, pay off the bills, and hopefully get us a bit ahead. Do you have any idea how much a six-foot-two teenager EATS, for god's sake?
There is no time that these funds aren't needed; the health insurance that is keeping me healthy is quite expensive, and while we keep our heads above water, we're at the state where one big problem can make things extremely difficult. One big problem with the car, or the kitchen, or any of the things that we rely on for daily life and function, could be completely disastrous.
I have, frankly, incredible friends and family. I've been told I present well, and this campaign was suggested to me by people who thought that, if there was a clear way to donate to help out, people might. That people thought that about me is very humbling. This kind of help is absolutely incredible, and I have no doubt that help is coming. I am amazed and enlightened daily by the generosity and grace of people I encounter, online and off.
I want to do huge things, you see. I want to craft legends and wonders and amazing things. I want to explore the world and share the things I see and feel and taste with everyone. I want to get back to being the writer I know that I can be, to help people express the depths of their imaginations and share them with the people closest to them and the rest of the world.
I want to make legends, and I want you to help me make legends. To this end, I have offered some rewards. For your generosity, I would like to make YOU a legend in the Victory Generoisty Omnibus!
This book, which ALL donators of ANY level will receive in .pdf electronic format, will contain NPCs and fully-realized characters for the Victory System based on you all. It will be a great guide for quickly finding a friend or an enemy in a city, or across a barony, county, kingdom, empire, or even a whole world. Ever wanted a whole world named after you?
You name the character and what Era (Fantasy, Near-Modern, or Space) they appear in, and I include them in the book. Your name appears in the credits.
I also offer the opportunity to have me run you and your group in a Victory System game based on your contributions to the VGO (Victory Generoisty Omnibus). This game would be run over Roll20 or Skype, unless you happen to be in my neighborhood!
I am also extremely grateful to the owner of Owniwerkz.com who has offered up a Steampunk Pirate Sword, an actual metal prop which will be engraved with my signature, for the highest (most ridiculous) level of donation.
To receive rewards, please make sure I get your e-mail address when donating.
Thank you for your time and attention!
I did myself some injury last week; I simply can not afford to get too upset. Let's suffice to say that a Doctor's appointment did not go well... my numbers and everything are fine, but my frustrations with the speed of my recovery kind of got to me. Led to a coughing fit which led to less pleasant things, so my throat got a little worse. It's starting to improve again now.
I'm starting to get more nutrients into myself... that was a real problem for a couple of weeks, to the point where there is a machine in the living room which CAN give me a continuous feed over twenty-four hours. Frankly, with getting IV Hydration several times a week, I'd really prefer not to be hooked up to another tube. I think looking over at the damn feeding machine is one of the best motivations I can have to get more nutrition in.
I'm just about up to 1,500 calories a day; the first nutritionist I saw after I got my G-Tube suggested 3,000 calories a day, and I quietly suggested that he could bite me. 1,500 calories is a little tricky... I think I can get myself up to 2,000 calories a day.
I need to move around and exert myself a bit more. Ok, more than "a bit." The problem that I'm having with both feeding and activity level is that I'm sleeping a LOT. I've got a nice nest built in the living room at the end of the couch, with all of my medicines and feeding materials, as well as my laptop (on which I'm currently typing). I've improved to the point where I can sleep comfortably for some time on my back or sides, although I get longer and better sleep still if I'm sitting up. It's all too easy to turn on the television, watch some YouTube, kick my feet up, and fall right the hell asleep.
I know a good part of that is my body trying to get resources to heal up with; then there's my low calorie count and current low-energy lifestyle. I'm going to have to get out and walk, if nothing else. Walk around the block, maybe get to the mall and walk some.
This really is the hard part. When I was in the Radiation and Chemotherapy treatments, I could easily measure my progress in weeks... my life happened on the seven-day cycle. One week is pretty much like the last week, now. My progress isn't on a seven-day cycle, any more... rather than weeks, my recovery time is measured in months. It's three months between my last Radiation treatment and the scans to see how successful my treatments are... all of my benchmarks for recovery are in terms of how many months they generally take.
About three months for my salivary glands to start to recover, maybe twice that long for the taste-buds to come back (if they do). Six months for any hair follicles on my face to recover, if they're going to . The throat damage? Some amount of months, undetermined, but I can already tell it's better.
The best indication that I have for "full" recovery is that, in general, people who have gone through similar therapies get to the twelve-month point before they start to gain more weight than they want to gain.
This is all predicated, of course, on getting good news in June when they do the PET and CT scans to see how well the therapies worked. All indications are good, but they might not have gotten it all. If that is the case, there will likely be some surgery to finish the process out, and then there will be some more recovery time.
I had a pretty good handle on the mental game during the treatments, I think. I've been trying to keep a good mental attitude and positive outlook, but this is a long process.... at least, from my point of view.
Then I remember the other people that I've met in the Chemotherapy infusion lab; the people who had zero prognosis for recovery, who have been doing the Chemo for years with no end in sight. When it comes right down to it, I don't have it that bad. A good prognosis and a few months of recovery beats the hell out of all of the alternatives.
I'm watching a LOT of survivalist and historic culinary videos on YouTube, and some horrible movies on the free channels available on my Roku. It's hard to keep my mind active, right now, but I can tell my brain wants to be active. I want to write... but that'll have to wait until I can take in some caffeine.
Again, thanks to everyone who's following along and keeping track of my progress. The GoFundMe campaign has stalled again, which'll happen when I can't post updates. Still, the campaign is going to stay open for the whole time I'm recovering, and maybe afterwards as well. Many thanks to all who have donated and/or Shared. Everything is a huge help at this point; not only monetarily, but I get a boost to my mood and enthusiasm when I see people participating in any way. Donations, shares, comments, even "Likes" are all awesome and incredibly welcome.
Thank you all for your time and attention! From the comfy nesting corner of my living room couch, you have my appreciation and gratitude!
I can kind of feel that the damage from the radiation and Chemotherapy is healing. The pain is still there and it's still quite acute. I'm going through a LOT of pain killers, and probably will be for some time to come. Still, I've got a fairly decent bit of control over the coughing and choking, and there does seem to be less of it. Still unable to talk much, but that's more because any time I try to consciously use my throat, I choke.
Then there's the fatigue. I'm in the interesting position of getting a lot of sleep, but that sleep being mostly useless to me. Having to get up every four hours for pain medications is part of it; having to constantly keep my throat clear is another. I get sleep in one or two-hour bursts. With luck, I get some deep REM sleep, but mostly it's more like that nap that wasn't quite enough. It doesn't help that I can't lie down or even really recline when I sleep... it has to be sitting up, or I choke much more often. The lack of proper sleep is a big contributor to the fatigue, and vice versa. Kind of a vicious circle.
Another big contributor to the fatigue is Anemia. I've had to have a second blood transfusion, and it looks like there will likely be more in my future.
The fatigue leads me to miss out on meals; that, and I'm just not digesting that fast. In a very good day, I get 1,000 calories in. There have been some 500 calorie or even 0 calorie days recently, and that's leading to other difficulties.
I'm currently receiving IV hydration with the help of my home care nurse; I'm in the middle of a five-day run of it. The dehydration raises my blood sugar and impairs kidney function, two things I really can't have happening right now. Hopefully, with the hydration comes a little more energy (there's glucose with the saline) which should allow me to have my feedings more often which will in turn give me more fluid.
Feedback cycles work both ways, but that's where things are at. The things I do wrong are magnified into fairly serious problems, but the things I do right are magnified into fairly serious solutions.
My mind is trying to take off and run again... I got the impetus in me to do some self-portraiture, which I'm including with this post. I'm studying the works of YouTubers that I admire to hone my own videos when I can get back to them. I'm also working on story-lines and plotting some works of fiction which will either enhance future RPG projects or stand alone as novellas.
More, I'm really getting into the cuisine of the 18th century and really getting into recipes and techniques from that time. I've got my wife and my close friend Devon hooked on these videos, too... I'm definitely going to be doing some historic cooking when I'm more recovered. Heck, as of this moment I'm planning on getting a food handler's license and some advanced food safety certification.
I'm going to be doing cooking videos when I'm more recovered; while I can't eat or drink now, and haven't been able to for quite some time, the thought of food and mastering techniques for preparing it has really helped me to focus on something other than my physical condition.
So, in many ways, I'm stuck. Nothing to do, physically, but try to marshal my physical resources towards getting my feedings in, maintaining my medication schedules, and healing. I spend my time either in my comfy office recliner or in a nest I've crafted out of the corner of our very comfortable living room couch. If I'm not in either of those places, I'm going to see a doctor for an examination or test or follow-up.
At the same time, my brain is starting to engage again. Some of that might be sleep deprivation; I'm definitely feeling some of that! I'm also starting to really want to get my hands dirty, creatively speaking, with writing and/or cooking or SOMETHING.
That's about it, for now. Thank you for all of your care and support. Your donations are being put towards helping with the household expenses and getting me ready for better videos and RPG products in the near future; thank you! More, I am still overwhelmed by the support I have seen from this campaign in the form of donations of any size, the sharing of my updates, and the caring and affection I receive in response whenever I do post.
Thank you all, for everything! I've got a longer road ahead of me than I had imagined, and it's not going to be an easy one, but even a longer road is easier to travel on when one travels with friends!
First off, I am officially done with the active portion of my treatment. The Radiation and Chemotherapy sessions are over. This puts me in the inactive portion of my treatment, which is good.... and not so good.
I've just hit the bottom. The course of cancer treatments I've been on is kind of like a big wheel... I start off on top of the wheel, making decisions and heading into the whole thing with as much enthusiasm and optimism as I can muster. As things progress, life becomes increasingly difficult as the treatments take their toll, singly and combined. Then comes the point, a little bit past the end of the active treatments, where the wheel is on top of me.
"Carry-over" from the treatments has been "finishing up" the process, continuing to increase the difficulty of the side-effects on a daily basis. That should be about done, now. This is about as bad as it should get. It is still pretty bad, though.
While my doctors never tried to hide the fact that this would be difficult and that there would be problems, they did tend to hold back on some of the more gruesome details, probably in the hopes that a) I would be the exception to the rule and wouldn't have those symptoms or b) knowing what was coming would shatter my optimism.
I am weak, and have very little energy. Most of my metabolic energy is going into the healing process, which is only now becoming properly effective as, up to now, the damage being done continually was greater than my healing could manage.
My throat and mouth are unusable; radiation burned on the inside and out, scorched and bleeding and in a LOT of pain. I'm on a lot of pain killers, right now. They're not enough. I don't think there ARE enough pain killers... not if I want to remain conscious. I can't eat or drink or talk. Swallowing anything, even just dry-swallowing, is a bad idea, pain-wise. Of course, there is the constant barrage of "did you try to swallow anything today?" from people who heard my doctors say that I need to try to swallow things, but somehow missed the part where there was going to be a time where swallowing wasn't going to be an option due to the pain.
Trying to heal itself, my throat produces a constant barrage of fluid. My salivary glands produce only a thick paste right now, which doesn't dilute the phlegm in any way, shape, or form. I'm constantly having to get rid of this fluid, which is disgusting to see and listen to even if you're NOT me. It's a lot worse from this side.
My taste buds? I know I can't taste Liverwurst. When I allow myself to be sensitive to what I AM tasting, it's... I'm going to say "unpleasant." Some details are unnecessary.
I retain both the Picc line and the G-Tube. This means I can't properly shower, and I need to be careful of them constantly, changing dressings every few days. Fortunately, I do have a nurse that visits a couple of times a week to take blood samples and help me take care of my dressings.
I'm taking in between 500 and 1,000 calories a day, which probably isn't enough. I'm down to 260+ lbs, and that's still going down. Good for my weight loss goals, bad way to do it. I sleep, or come close to sleep, over twelve hours a day. I can't get proper sleep because I need to be able to wake up to clear my throat and/or take pain medications every few hours. When I'm so tired that I sleep past my alarms, I do get substantial rest, but at the cost of being in substantial pain and choking for a while.
Another things that my doctors have tended to be short on details with is the time schedule from here. Two different Oncologists with two different disciplines, this can happen. At this point, the Wheel of Cancer Treatment slows... way... down.
In a week or so, maybe two, I might feel like "hey, maybe I will get better some day!" That is NOT where I'm at now. Proper function for my throat is weeks, if not a couple of months away. Longer for the salivary glands and taste buds to come back to function.
Even if I get to the point where I can eat and drink normally again (I can't even THINK about the last procedure to fit dentures until my throat heals much, much more), I'll need to retain the Picc line and G-Tube until after they do the scans that will tell us how effective the treatment has been. Those scans? They come at the twelve week point. I have eleven to go. June. Third week in June, if I'm right. Certainly around there.
If everything has gone as it should (and my doctors are somewhat optimistic on this point), I should be seeing something like normality in six months. In a year, I might be gaining more weight than I want.
This was not the time line I thought I was dealing with. It's going to take longer to recover from the treatment than it took to receive the treatment, which actually makes sense. I just wish that this time frame had been clear from the get-go.
I may be fighting some depression at this point, which is par for the course. My physical body is in a depressed state, and it would be miraculous if my mind didn't follow it to some degree. Nothing for it but to move ahead, though. It's not like there's an emergency brake or an escape pod. The only way through this whole thing is to get through this whole thing.
Thank you for your continued attention, affection, and support in any means or fashion. I'll try to keep these current.